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Showing posts from March, 2019

APF Merchandise

Please get your APF Merchandise today all sizes have been updated in the line item description. Prices are now on clearance. If you see a zero in the size you want we will NOT be ORDERING and ask that you choose another item. Watch out in the next week for the new tshirts-umbrellas-super nice-APF bags.
https://porphyriafoundation.org/store




 Thank you for supporting the APF
& Porphyria Warrior!

USA CANADA EUROPE UK ASIA PAKISTAN RUSSIA We shipp anywhere for an additional fee once an order is placed we will contact you via FB or Email to get your permission of international fee

Alie Campbell VP

ALIE CAMPBELL PORPHYRIA and ME TYPE OF PORPHYRIA Variegate Porphyria (VP) My story is probably not much different than most. I was misdiagnosed most of my life, sent to psychologists because physicians just couldn't find a cause for my illness. Finally, after an incorrect Lupus diagnosis and a week of testing, I received my Variegate Porphyria diagnosis. As a child growing up in Tampa, FL, I would constantly complain that the sun hurt my skin and my eyes but "children" were not supposed to wear sun glasses. Today I am rarely seen without them, day or night. I craved sweets and of course "children" should not eat too much sugar! I went to a boarding school most of my life and "they" had the same rules about sun protection and sweets the same as my parents. For reasons like this, I have always wanted to write a book "If you Can't See it...It Must Not Be Real" for all of "us" who are ill but it can't be seen, and so it must be …

Porphyria Post

Porphyria Post FDA Announces Interim Commissioner On Tuesday, the Food and Drug Administration announced that Dr. Ned Sharpless will step in as acting Commissioner following the resignation of Dr. Scott Gottlieb last week. Sharpless is an accomplished researcher, oncologist and administrator. He was named director of the National Cancer Institute in October of 2017 following his position as director of the University of North Carolina Lineberger Comprehensive Cancer Center. Alex M. Azar III, secretary of health and human services, stated that this position is temporary and the FDA is continuing their search for a permanent commissioner. Read the full article at https://www.nytimes.com/…/…/12/health/fda-ned-sharpless.html ATTENTION ALL SHADOW JUMPERS!! FIND YOUR SHADOW 2019
applications are due in just 2 days!! Don't miss this opportunity for a trip to Disney for your family!! Click here to apply TODAY! URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!!! Do you experience pain due to Acut…

Telemedicine Consultations

Telemedicine Consultations If you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically. A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston. To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit. During the teleconference, Dr. Anderson wil…

Member Story Diana Van Houten PCT

DIANA VAN HOUTEN TYPE OF PORPHYRIA Porphyria Cutanea Tarda (PCT) Last summer I was babysitting my four grandchildren at my daughter's house while they were on vacation, I noticed a large blister on my hand and thought I had splattered grease on it. After I went home a week later, I had more blisters on my hands of different sizes. I had a really big one on my right hand, and every time I shook hands it would hurt. A friend suggested that I should sterilize a needle and drain it. I did so and put Neosporin on it as well. Needless to say it got infected, so I went to the Dr. and he started running tests on me. After several tests, he found my liver enzymes were high, so he sent me to a dermatologist who did a biopsy of a small blister and had me do the 24-hour urine test. That is when I found out I had Porphyria Cutanea Tarda (PCT). Next I started the phlebotomies. On Dec. 1st, the 8th time the Dr. did the blood draw, I got what I thought was the flu and was so sick, I could not go a…

AHP- URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!

URGENT! URGENT! PAIN COMMENTS NEEDED ASAP! Make a public comment today through this link: https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001
These comments will help inform the federal government about the needs of patients with Acute Porphyria as they develop federal guidelines.
Patients, caregivers, and physicians can all comment. Share this link with others.
- Why you are writing - Your diagnosis - Description of your pain - Unsafe drugs trigger an Acute Porphyria attack - That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria. - Any personal details you would like to share Don't wait - take 5 minutes and do this right away!
https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001&fbclid=IwAR3KC8ZSv0C7ks9wVSOElsF6t-cvs_-pt4Ts-5C2yDxNR1stpeKo796Fizw

PORPHYRIA AWARENESS WEEK - APRIL 6-13, 2019

PORPHYRIA AWARENESS WEEK - APRIL 6-13, 2019Thursday February 14th, 2019 Over the years this time honored tradition has inspired porphyria patients to go out and educate their community on porphyria. Over the years many great ideas have been put into action such as, in 2014 when Amanda Rich made purple bracelets for porphyria survivors or in 2015 when Victor Mejias hosted a fishing tournament for the APF. In 2018, Cassie Tucker and her son created a T-shirt campaign to raise awareness for EPP and donated part of the proceeds to the APF! This is the time to use your hobbies and talents to spread the word about porphyria. There is no limit to what you can accomplish! What does 2019 hold? Murphy McNutt (PCT) is organizing a fundraiser for the APF at her fitness studio. She is planning a "ride" with the support of the studio owner and plans to have riders wear purple! Check out Murphy's story on the APF website Member Stories, visit https://porphyriafoundation.org/member-stor…